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Notes on the 2019 International Albinism Awareness Day (1)

Douglas Anele

The 2019 edition of the International Albinism Awareness Day (IAAD) has come and gone, but for those that attended the conference and variety show hosted by the leading advocacy group for persons living with albinism in Africa, The Albino Foundation (TAF), Nigeria, fond memories from the occasion will linger for a long time because of the rich variety of events packaged by the organisation. But before I describe the highpoints of the celebration, it is important to contextualise our discussion by bringing to limelight some facts about albinism, particularly its aetiology, nature, prevalence and manifestations.

This is because most Nigerians – indeed over ninety-eight percent of the population, including persons living with albinism themselves – do not really understand what albinism is all about. For starters, the word ‘albinism’ is derived from the Latin expression ‘albus,’ which means ‘white’ in English language, an indication of the skin colour of albinos. Generally speaking, albinism is a congenital absence, or almost complete absence, of any pigmentation or colouration in a person, animal or plant resulting in white hair, feathers, scales and skin and pink or red eyes in mammals, birds, amphibians, fish and other small invertebrates. More specifically, in humans it manifests as total or partial absence of pigment in the skin, hair and iris.

Physiologically, it is a genetic disorder caused by the inheritance of recessive mutant gene alleles, leading to the absence or defective production of tyrosinase, a copper-containing enzyme necessary for the synthesis of tyrosine which is an important biochemical precursor for producing the pigment melanin. Two major categories of albinism are recognised by medical experts: the oculocutaneous variety that affects the eyes, hair and skin, and ocular albinism, restricted to the eyes only. Aside from the pioneering studies on albinism carried out in 1975 by Africa’s foremost dermatologist, Prof. Amaezi Okoro, which disclosed a prevalent ratio of 1:15,000 in the defunct East Central state, the most recent computation ranks Nigeria amongst the highest in the world, with an estimated figure of 2,000,000 Persons with Albinism (PWA). Now, if we divide the country’s estimated population of 180,000,000 with that number, it means that for every 90 Nigerians there is at least one albino. That number is staggering, considering the primitive level of understanding of albinism in the country as well as the huge quantum of resources required to provide PWAs with the enabling environment for successful and meaningful life.

Talking about making life more comfortable or meaningful for PWAs, it is necessary to understand some of the challenges each albino faces as a result of the genetic condition or anomaly. Because melanin is crucial in the normal development of various parts of the eye, especially the iris, retina, eye muscles and optic nerve, absence of that pigment brings about abnormal eye formation, thus leading to problems with focusing and depth perception. Other ocular issues associated with albinism are: photophobia and decreased visual acuity due to light scattering inside the eyeball; nystagmus, that is, irregular horizontal or circular movement of the eyes; extreme myopia or hypermetropia; underdevelopment of the optic nerve; and impaired development of retinal pigment among others. On the issue of skin problems in albinism, the most critical is the harm or damage resulting from ultraviolet radiation due to prolonged exposure to the sun, which makes PWAs very susceptible to sunburns, freckles and various forms of skin cancers (melanomas).

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These eye and skin problems cannot be cured with any type of medication or treatment. In the concluding part of our discussion, I will outline some simple but effective ways of managing the health concerns of albinos. For now, it is necessary to point out that the greatest challenge PWAs confront all the time is socio-cultural, including threats, particularly in sub-Saharan African communities where irrational myths, superstitions, harmful practices and unfounded stereotypes abound. Of course, albinism cuts across race and gender, but its effects are particularly acute in the black populations of Africa because aside from widespread poverty and ignorance the colour difference or contrast between an albino and someone with normal pigmentation is quite dramatic and easily noticeable.

That said, it is disheartening that as I write, millions of Nigerians, some with highfalutin academic and professional titles, still believe all sorts of nonsense about PWAs, such as that albinos are people conceived in the afternoon when the sun is brightest or hottest, that they are deities or children of deities, and that albinos should avoid food containing salt and pepper. In several African communities, albinocide, the deliberate killing of albinos for ritual purposes or out of deep-seated hatred and rejection of albinism, is still practised. Albinism has always been a source of ridicule, fear, discrimination, stigmatisation and even violence against the individual. Another obnoxious false belief is that sex with a female PWA will cure a man of Acquired Immunodeficiency Syndrome (AIDS). Accordingly, in Zimbabwe, some women albinos have been raped, which eventually led to Human Immunodeficiency Virus (HIV) infection. Albinos, particularly women, find it difficult to get spouses or male lovers.

There are numerous cases of wicked husbands severely maltreating their albino wives for giving birth to albino children; in some instances, the man either abandons the wife and children or simply divorces her. Moreover, some wives with normal pigmentation behave as if they did their albino husbands a favour by marrying them, thereby poisoning the matrimonial atmosphere in their homes. The emotional and mental torture some albino men go through in the hands of their overbearing wives or lovers is better imagined than experienced. All this implies, citeris peribus, that albinos generally are more prone to depression, self-alienation, feeling of inferiority complex and suicidal tendencies than people with normal pigmentation.

Now, in spite of the fact that PWAs constitute one of the largest vulnerable groups in Nigeria today, they are actually neglected by government at all levels and over the decades have received very little attention, security and support from relevant public institutions in charge of health, education, and employment and so on. That PWAs require the support of government cannot be overemphasised, since governmental interventions will make a significant difference in meeting their needs in the areas of healthcare, inclusive education, economic empowerment, participation in the political process and protection from various kinds of societal abuse, stigmatisation and discrimination. Available statistics indicate that over 600,000 Nigerian children living with albinism are subjected to discrimination by their relatives, schoolmates and peers. Some families make life difficult for their albino children, hide them away from the public or refuse to educate them based on the silly false belief that educating an albino is a waste of resources because their employment chances are severely limited. Meanwhile, although it is true that in the country today some public and private institutions have refused to employ albinos mainly because of their alleged mental and physical inadequacies, a little reflection would show that, actually, the most powerful weapon for liberating albinos from the human right abuses they suffer is good quality education and economic empowerment so that they can stand on their own. But the hideous spectacle of albinos farming, selling cheap articles and begging in the hot sun to eke out a precarious living when they should be indoors is distressing. Government officials see these things and, yet, do nothing to help such vulnerable people.

From my own personal experience, a normal pigmented child does not experience up to one-tenth the kind of psychological abuse the typical albino pupil usually encounters in school. For example, as probably the only albino in the class or even the whole school, he or she is constantly subjected to jeers, bullying, ridicule and dehumanising name-calling by other pupils and, in a few instances, by the teachers as well. This produces in most albino children, especially those from poor families, low self-confidence, low self-esteem, low self-worth, self-disgust and self-abnegation. Consequently, many albinos, even after getting educated, lack the mental and psychological wherewithal to live productive lives. Lacking in self-confidence to compete favourably with others in the cut-throat competitive Nigerian labour market, the average PWA would be unable to reach the zenith of his or her potentials, meaning that both the individual and the community lose because the skills of a vast majority of albinos are not harnessed for the greater good of society.

Luckily, through self-motivation and support from my parents, I was able to overcome the problem of low self-esteem, which helped me develop self-confidence and dignity as my academic performance improved dramatically when I entered secondary school. Yet, after many years of hard work to the point of reaching the highest academic rank in the prestigious University of Lagos, some people are so pachydermatous to the extent of not appreciating the fact that I cannot be defined or straitjacketed by ordinary skin colour alone or be intimidated by stupid comments and foolish attitude towards me because of albinism. Even so, dim-witted adults and badly reared children still jeer at me, call me all sorts of names, and occasionally chant “oyibo pepper, if you eat pepper, you go yellow more more” when I am passing by or minding my own business.

To be continued

 

 

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